Down Syndrome? Bring It On!

After a beautiful water birth, my baby was scooped up into my arms and my husband was excitedly declaring, “It’s a boy! It’s a boy!” Pure elation overtook me and tears of joy came streaming down my face. We stared at our beautiful, perfect little boy and named him Harry.

That was Monday. Little did we know that week would be a roller coaster ride of emotions, and that by Sunday, everything we thought we knew would be different.

We stayed overnight in the hospital and were told we would be able to go home after the doctor had done the rounds and “routine newborn checks” the next morning. Tuesday came — we kept asking when the doctor would be coming so we could go home, but we kept being told he was on his way.

When the doctor eventually arrived, it was obvious something was not “routine” about his checks. He had brought another doctor with him and was intently checking certain characteristics on Harry. I heard comments about “palm creases” and “sandal toes.” It all seemed very random to me. Once he finished, the doctor turned to us and said, “He has some features consistent with trisomy 21.” My mind drew a blank; should I know what this is? After a short pause he added, “Down syndrome.”

I’m not really sure what he said after that — something about Harry’s eyes and the gap between his toes — but to be honest, I wasn’t listening. I was staring at my gorgeous baby as tears filled my eyes, thinking, Why is this doctor trying to pick out things about my baby? Why is he trying to insinuate that my baby is anything less than perfect?

That day and the next, we were stuck at the hospital. They needed to take blood from Harry to test him for Down syndrome among other things. Wednesday night, we were finally home.

They said we wouldn’t receive the results for a few days, but ever since we were told about the possibility, we knew, so we prepared ourselves for the results. On Saturday, we went down to the hospital where we sat in a room and waited for the doctor to come. She said, “I’m afraid team result is consistent with trisomy 21. I’m sorry.” She gave us some information about when and where to receive support, and then gave us some privacy and said to leave when we were ready.

We cried. I think part of the reason we cried was we finally had the result we were waiting for. Then we cried harder. Not because of the result, but because we felt guilty for crying over the diagnosis when it didn’t make a difference in who he is. I believe our son was destined to be born with his extra chromosome, the same way he was born with blue eyes, or born a boy, or born with his dad’s chin. It’s a part of him, and we love him with all our heart.

Thinking back, I wish I’d confronted the doctor about the way she delivered the news. What was she “sorry” for? Why did she feel the need to apologize for telling me my son was different? It baffles me now.

Harry is the most perfect son we could ask for. He tries so hard at everything he does, which is all we can ever ask of him. He is smiley, babbles at us and loves his milk — just like any other baby his age. We don’t know what his future will hold. Will he go to mainstream school? Will he be able to live independently? Will he get married one day? But we could be asking the same question of our son even if he didn’t have Down syndrome.

No one knows what the future will hold for their children. You can only hope you support them enough to live a fulfilling life filled with love, laughter and happiness. We already battle with the stereotypes and misconceptions around his condition. We can only hope that, in time, we will break down barriers and show the world what an incredible child Harry is. Down syndrome is part of him; it does not define him, and I challenge anyone to try and tell me otherwise. It’s going to be a challenge, but one I’m ready for.